It’s past 1:30 a.m. here in Indiana and I haven’t slept yet. I’ll get to that, after this. Today was a crazy day. Jude had to arrive for proton therapy at 11:45 a.m. By the time we loaded him in the hot car to drive to the treatment center, he realized he hadn’t gotten anything to eat or drink all day and he got really mad about it.  We had just distracted him all day long when he asked about food or water and even ensured he didn’t run or play too hard so that he didn’t get thirsty. He cried in the proton center’s waiting room about being hungry and thirsty and they got him right back for treatment. He was put to sleep with gas and then poked after he was sleeping (which is the way he likes it). While he was undergoing treatment, we learned that the actual beam time is only about 30 seconds a day (Monday through Friday). It just takes a long time with set up (e.g., 2 X-rays to position the beam to within a millimeter of its target). We also learned that they are doing 3 beams to minimize the impact to the healthy brain tissue on the way in. They thought through every last detail about how to go in to minimize brain damage, even down to the detail of how to ensure Jude will have no permanent hair loss from the treatment (using the 3 beams gives a low enough dose of radiation that it will not permanently damage the hair follicles). Of course hair loss is the least of our concerns, but I love to see how they are detail oriented since it makes me very confident in the treatment plan. I was thrilled that the radiation oncologist says that he thinks Jude is curable .  Jude went to sleep mad from the gas and woke up really mad, which is apparently common. He was kicking and screaming when he woke up. Then he fell back to sleep and he slept and slept. I got the sense he would have slept all day, but a nurse came in a told us we could take him to the car sleeping. All our boys had fallen asleep so she helped us carry one of them to the car and we left.Â
The kind staff at Jill’s House agreed to give me an empty guest room as my office so that I can have a quiet place that locks to work. I got my office set up after the treatment today and even worked on a few projects, which is why I’m up so late. Actually, probably the real reason why I’m up so late is major technical difficulties — the printer I got from work is not coordinating with my work laptop (they think I may need a new laptop). I was on the phone for several hours with 3 different tech support people. Finally, after none of them could help me, Andy saved the day and hooked up my work printer to his computer so I could print the stuff that was too difficult to digest while reading on a screen.Â
Tomorrow should be a better day since my office is working somewhat and Jude has his proton appointment at 10 a.m.  A 10 a.m. start will be less difficult for eating/drinking reasons, although I think I’ll stash some food in the bathroom to eat behind his back tomorrow morning so I don’t have to suffer with him.